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Tuesday, April 21, 2015

Two brothers with advanced muscular dystrophy in
Melbourne are using 3D printing tools to 're-enable' themselves – and
they are now starting a public makers' space to share their tricks with
other people with disabilities.

The identical twins, Chris and
Nick Fryer, were diagnosed with the crippling Duchenne strain of
muscular dystrophy at the age of eight, and were told not to expect to
live beyond 21.

Now 37 years old, they are the oldest people with
Duchenne MD in Australia, and they are continuing to find new ways to
extend and enrich their lives, using home-made technological aids.

Despite
being reliant on ventilators around the clock, with movement restricted
to their mouths and fingertips, the brothers have made their own
robots, drones, wheelchair support frames and computer aids.

"We've always been interested in technology, even when we were very young," Nick said.

"When
I was little, my dad taught me how to make model aircraft out of
balsawood and glue, and my disability took that away from me, but now
technology has given that ability back.

"I can design things on the computer and print them out on my 3D printer and it's fantastic."

Media player: "Space" to play, "M" to mute, "left" and "right" to seek.

"I wanted to adjust how I was sitting in my wheelchair so I designed the little piece to go in the side support bolts.

"We measured it up, designed something, 3D printed it and screwed it in and it's great."

Meanwhile, a robot on the floor – 'Bonsai Bot', named after their love of bonsai - is still a work in progress.

"He's like a pet you can turn off," Nick said.

"The
black parts you can see are all designed and 3D printed by us, and we
decided to put an ultrasonic sensor on it so I've made him look nice and
cute."

After
visiting a 'makers group' in Hawthorn recently, Chris and Nick decided
they wanted to begin their own space for sharing technology and designs.

They began MESH – Melbourne Eastern Suburbs Hackers
– an incorporated group for anyone interested in creating their own
technology, with a focus on enabling people with disabilities.

"I think a lot (of people with disabilities) don't even know this exists, and they don't know what they can do," Nick said.

"What we want to do is to enable people with disabilities to design and create things for themselves.

"In
the past it was virtually impossible for someone like me to actually
make something physical, but now with computers, computer-aided design
and 3D printers it's become relatively easy."

Nick says the mantra they live by is "it's not people that are broken, it's technology that's broken".

"Eventually
technology will eliminate disabilities, you can already see advances in
exoskeletons and prosthetics and all sorts of areas where technology is
helping disabled people to, in some cases, eliminate a disability
entirely."

"That's what I want to promote. With robotics and all the technology being developed, you can re-enable yourself."

The
group is currently operating out of a rented space in Ringwood, but the
twins are looking for a more suitable permanent home.

Access to technology has been central to the twins' survival for most of their adult life.

When
they were 21, the disease had taken hold of most of their major
muscles, and their lungs were struggling to support their breathing.

Chris was on the brink of asphyxiation, and ventilator technology was not readily available to people with MD.

It
was only because their mother, Jenny, had seen how effectively
ventilators were being used for MD sufferers in Holland, that they were
able to access the technology.

But it took a crisis to get there.

Chris reached a psychotic state from not having slept properly for three months when he was 21.
His brain was waking him up automatically to prevent asphyxiation in his sleep.

Furious
and desperate, Jenny took her sons into the Austin Hospital emergency
department and waited eight hours to see a specialist, demanding that
her son be given a ventilator.

"Ventilators weren't new technology, they could have been using them on us for a very long time," Nick recalls.

"There are a lot of MD sufferers who died unnecessarily," he said, adding that his best friend, Ben, was one of them.

Their
doctor, Michelle Caldecott, helped to tailor the machine – which is
much like a sleep apnoea mask – to Chris and Nick's condition.

Ventilators
are now commonly used among people with muscular dystrophy in
Australia, and the average life expectancy of someone has increased by
ten years, now sitting at 30 years old.

Having already exceeded that age, Nick and Chris are determined to increase the average life expectancy further.

"People still think of MD as being a deadly disease that kills you when you're young. I think it's no longer true," Nick said.

About Me

I am full-time Mass Communication faculty at Towson University in Maryland and adjunct faculty in the City University of New York (CUNY) Master's in Disability Studies program.
I research media and disability issues and wrote a 2010 book on the subject: Representing Disability in an Ableist World: Essays on Mass Media, published by Advocado Press.
The media have real power to define what the public knows about disability and that's what I research.